A Woman's Journey With Rare Disease

Finding Common Ground With Complex Life Experiences

I have quite a few interesting comments here from time-to-time on what I post about. I’m also getting a few followers on WordPress now since I started this blog back in August. As a result, I have some great exchanges & have followed some really unique & interesting blogs on a variety of subjects.

Speaking of which, one of them actually gave me a blogger recognition award recently. Humbling, because I don’t blog for that reason. Yet appreciated, because as many bloggers will tell you it can be a challenge sometimes to keep the well full & the posts fresh as often as one would like.

I love this blog “The Sick & The Dating” because I find it relatable. It speaks to me for several reasons. The blogger is close to my age. She has health problems, but unlike me, she actually doesn’t have or can’t get a definitive diagnosis. She’s a midwestern transplant like me too.

Yet the courage in her blogging when it comes to chronicling her dating adventures in Phoenix is second to none. Some of it reads like a novella at times. It’s that engrossing & interesting. But I commend her for sharing, because that level of putting yourself out there personally in this particular sphere is no easy feat & can come with a cost, even with a computer screen as a buffer.

In fact, the issue of dating & intimacy is one seldom discussed in the chronic illness/spoonie, rare disease, or similar communities as a whole. If it is, it is shared in bits & pieces here & there, almost tiptoed around. What little conversation exists feels often forced & awkward.

Sometimes the needs are addressed in group conferences where medical terms are discussed or questions are answered in relation to changes occurring in people as part of their “disease process” like the need for oxygen or adjusting to a new physical disability or limitation. Most interactions I see in that circle are from married couples with partners who feel their disease or this new physical change is intruding on their intimacy. Granted, that is a hard thing to admit to, but truly, what medical “band-aid” exists for that?

I do understand this huge 800-pound gorilla with a complex personality well. Too well, in fact.

The only thing I will say on the subject (since it’s a highly personal & intimate one) is that I am thankful I have what I have.

I have a good home with 2 best friends who are like family & treat me well. They understand my needs for space & privacy. I do my best to respect theirs. They have made it much easier for me to journey on this path. They are the ones that help keep things moving when I’m sick or in the hospital, take me to appointments when I can’t make the long drives myself anymore, hop in the ambulance at 3am without flinching. Keep up the house when I’m unable. Call me out on my b.s. when I tire of taking care of myself as I should. The list goes on…

I am happy with my life. It is complete as is. They have their life, as I have mine but it’s still shared & it’s a beautiful thing.

I’m fortunate for that, because as my health worsened from 2004 on – at points it would have been extremely hard; but also dangerous, for me to live by myself. Though that was one of the harder adjustments I had to make in college & after since I grew up an only child & was used to my own space, routines & “things”.

Yet, I will be the first to admit, I am often envious of really great relationships. Whether the couple is married or not. When it really truly works. There’s an luminosity about it that shines brightly.

It’s like admiring a great work of art or feeling moved to your core by music. It’s also a unique curiosity because regardless of how many of these I witness in my life, all are exquisite & unique – never the same even in similar experiences.

However, I admit I don’t have the time, energy, or interest to put myself out there for the hard work it often takes to get there. I’ve tried a few times. Never has worked out.

Sometimes I did it for the wrong reasons (and there are any number of them that people can relate to. They are universal period taking health completely out of the equation). Or this ridiculous societal expectation for people my age to “settle down”.

Others had other factors at play that posed too great a challenge & sacrifice for either person to make it work & still be truly happy.

Some of it is has always been that I feel I already have my hands full with my own life as it is. Even though I go through hell sometimes I can’t say I’m not happy with the way things are & have been as a general rule. I’ve still done some incredibly meaningful things.

I never say never, but I don’t go actively searching anymore. Yet I don’t completely close the door on the possibility. If it’s meant to happen then I guess it will. If not, then my life will continue unfettered & content.

Yet, I’m glad I get to witness all of this from time-to-time. The entire process of dating & finding love because to seal oneself completely off causes a person to really miss out or learn what they are seeking for themselves.

I will say though, I think the main reason this is so hard for people with precarious health is because they give themselves an infinite number of reasons of why it can’t work or what is wrong with them, or why they are undeserving . It is the undercurrent here in those thoughts that feeds that gorilla, too.

It’s also such a highly personal & private issue so outside one-to-one support, it’s a tough issue to tackle.

Still, it’s worthy of making the effort. The discussions in these support communities when they come up needs to go beyond technicalities & medical adaptations or suggestions of when & where & how to discuss issues with a potential interest. Occasionally it does. But not near often enough.

There needs to be a discussion, much like the ones in workplace issues as to why people with illness struggle. Of course, it’s a huge discussion because the reasons & experiences are so varied & sitting in a room with mixed experiences can make the conversation more difficult at points. Yet we do need to put it on the table, without sugar at least occasionally.

That said, there is also the opposite side of the coin. People who thought they had something then in their darkest hours abused & abandoned whose stories come up from time-to-time. People are at a loss to respond to it with something other than radio silence or offering platitudes about how that person will be better off by themselves. That sharing is equally hard & deeply personal. It deserves more true empathy, understanding, & attention. Where is the support for those people?

Just something to mull over… There are no easy answers to any of this. In fact it can be a common experience whether someone is “healthy” or “sick”. These are just convenient labels & excuses to avoid discourse.

It’s not that simple to address. But it doesn’t mean it’s not worth pondering & discussing with more than just internal dialogue.